May 2010

Best CF Treatment Plan? - Connections - May 2010 - Cystic Fibrosis Foundation
Amy Mueller, MSW, is a social worker at
Hartford Hospital’s Adult CF Program.

Best CF Treatment Plan?

Amy Mueller is the social worker at Hartford Hospital’s Adult Cystic Fibrosis Program in Hartford, Conn. Since 2006, she has been involved in the center’s Patient Family Advisory Board and recently helped launch a separate Adult Advisory Board specific to the Adult CF Program.

As an expert in adult CF social work, Mueller has helped develop a new curriculum for health providers taking part in the Foundation’s Learning and Leadership Collaborative, a program to improve the quality of care in adult CF centers nationwide.

What is your role at the CF care center?

I’m a patient advocate. I help the healthcare team understand the patient’s experience and how it affects their care and medical treatment.

I help adults with CF with a range of issues — from moving away from home to attend college, to difficulties with insurance coverage, to managing CF treatment. I work with them to address any issues they may be having and try to help the patient and the healthcare team get on the same page in terms of their care.

Why is it important to have a social worker as part of the CF care team?

To receive CF Foundation accreditation, a CF care center must have a social worker on staff. Having a social worker involved helps remind the whole team that we need to work together. We really have to understand how patients perceive their illness, their future and their past. We have to understand all their goals — and not just in terms of CF — because their life goals affect treatment decisions, too.

The closer you are to understanding the entire person, the closer you get to helping them take action that is true to who they are and what they want in life.

How do you advocate for your patients within the care team?

‘Meet the patient where they are’ is a mantra for social work from the first day you start your education. Social workers try to understand the unique needs of each individual and avoid a “one size fits all” approach to care. This understanding is the basis for everything I do as an advocate, and I work to make sure the patient’s voice is heard in the process of planning his or her care.

My goal is to help every adult with CF live day to day with this illness and still keep perspective on their futures.

By talking to adults with CF and getting to know their daily challenges, I can help physicians and other team members gain a more complete view of each person. This can help shape their treatment and care.

Can you give an example of that?

In a recent clinic, a care provider recommended a new treatment for an adult with CF. When I met with the patient, I discovered he really didn't understand how the treatment is administered and that it would add time to his daily regimen. He thought it was a pill when it was a nebulized treatment! I asked the provider to discuss this further with the patient, and they were able to negotiate how to add the treatment to the patient’s regimen in a way that worked for him.

What’s the most challenging aspect of working with patients?

On my care team, it’s having enough time. Focusing on patients with chronic illness takes time, and working in other areas of the hospital as well can be very demanding. Pulmonologists are often responsible for quite a large number of patients. So it can be a real challenge to juggle sometimes competing responsibilities.

What role do adults with CF play in their own care?

Adults with CF have a very important role in their own care. Only they can tell us what is working for them, and what isn’t. Whether a person is spending nine hours each week in ballet practice or a summer studying abroad, this information helps the healthcare team make the best treatment decisions possible.

For me, it’s critical to get patients’ perspectives and input on CF care in general. I really enjoy working with them as equal team members. I think we get our best ideas about how to improve what we do from our patients.

What has changed at your hospital because of patient involvement?

A few years ago, patients had been having difficulty getting through to the office to make appointments and get prescription refills. The devil is in the details. With the help of our Adult Patient Advisory Board, we developed a call log and identified key people who would respond to calls.Things have been better since.

I hope, too, that patients are increasingly feeling like ‘team members’ in their care. I’m lucky that I work with care providers who really try to practice patient-centered care.

What does the “team approach” to care mean to you?

We are always trying to improve how we work together. Care is a collaboration between patients, families and the healthcare team. To make a change, we have to work together.

Learn More

back to top